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Saturday, October 29, 2016

About a year before James was born, on Labor Day in 2009, my left ear started ringing. It never stopped. For the first few weeks, I thought it might drive me insane. Wake up, ringing, Go to sleep, ringing. I saw doctors, all of whom concluded it was simply a product of the severe conductive hearing loss I was born with. I tried a surgery to plug the ear canal drilled for me when I was in third grade.

None of this worked. In fact, over the years the tinnitus has simply gotten worse and expanded to my right “good” ear. The end result is that, for me, there is no silence. This is profoundly unpleasant, but it’s best not dwell on it. If you sit and focus on the ringing all day you’ll never have time to do anything else, and it’s a losing battle to begin with. Your are singularly incapable of improving your situation, and can only degrade it. Tinnitus is simply your nerves trying to fill the gap left by the absence of sound. Sound should be there, and your brain knows it.

Today is James’ 6th birthday. Six. If he were alive today he’d be blazing through milestones. Kindergarten, first day of school. He’d be developing his own interests, his own new personality, slowly beginning to edge to the threshold of independence, albeit only a toe at a time. Dinosaurs? Sports? Something i don’t even know about? I wonder these things. The more time that passes the further the deficits pile up, the more remote and uncertain any projections become. I hardly know how James would have been at six, though I do wonder.

Every birthday I run through this exercise, with diminishing returns. I have a decent, if imperfect, idea of what James might have been like at one or two. At six? Pure conjecture. The man he might have been at 18, 30? Impossible. That is a difficult reality to accept, because although James is gone he is always with me. It is impossible to leave your children anywhere once they enter your heart and the grave is no exception.

Six birthdays without James and five years later, the loss of James is a bit like an emotional tinnitus. The hurt is constant, always there, hovering in the background, ready to surge forward given the opportunity and overtake your consciousness. It’s matured. The keening, wailing all consuming pain of the first year or so subsides, the uncertain question of whether or not you would emerge answered in the affirmative, if only because you remain alive.

The pain doesn’t leave though, it simply becomes part of the background noise that is your life. A constant, open wound, but one you know how to walk with. Over the years you’ve gained tools. Allies. Strength. You don’t even want it to heal, not really, because that would impugn the love that gave life to it. You want to remember, always, fiercely and urgently. You accept, however, that you must also live. He would want that.

Every birthday that comes around reminds me of this. There are two options. The first is to spend all day playing the “what if” game. What if James were kindergarten? Would he like his teacher? What would they be learning? What if James didn’t die. God, I wish James hadn’t died. That last statement is the only important one. I would give anything in my power or beyond it for James to still be here. But that’s not my choice. This first exercise can only end poorly. The rejoinder to “what if” is always “why not” and the answer “because he died. He got cancer and he died” can only end in sorrow, regret and misery. I try, though I do not always succeed, to spend my time practicing the second:

Today is my son James’ birthday. James was my first child, my son, and I loved him dearly. I will forever have had the privilege of being his father, and I am honored that he shared two of my names and that I was lucky enough to spend eight months and seventeen days taking care of him. Cancer or no cancer. I wouldn’t trade a minute of it. On his birthday, I remember him. I remind those around me of him, and I beg of them to do the same.

My heart remembers. The pain is simply a way of making a sense of the absence. If James were alive, he wouldn’t just be six. It would be his birthday. He deserves to have it celebrated.

Thursday, July 21, 2016

I remember.
Perhaps that is all that remains, five years on. Our father son relationship long ago exited
the kind of linear progression I initially envisioned with his birth. Walking, talking, elementary school, junior
high, high school. Awkward advice chats
about how to handle girlfriends. Well-meaning
instructional sessions on how to throw a football and a baseball, though god
knows he’d be better off learning all things sports from someone else. The most I could contribute would be lessons
in the fine art of armchair quarterbacking.
James and I will never share those kind of father son moments, in our
last moments he will always remain eight months and 17 days old, full of
promise and aspiration. I will never
know the five and a half year old boy he’d be today, on the edge of
kindergarten and a brave new frontier. I
would have liked to, but he’s only a projection now, more uncertain in nature
with every year. What remains is memory.

That’s all I can do for him on a certain
level. Sure, I can raise money for
cancer, heighten awareness, but these all amount to varieties on a theme. I give to charity or research, I post links
reminding my friends to go gray for May.
It’s not for May though, and it’s barely for brain cancer, which I am
interested in primarily and viscerally because of James. It’s for him.
It’s to remind the world and everyone that he was here, that he got
sick, that he died, and that he was wonderful despite all that. I can’t post pictures of his birthday party
or his first day of school. I will never
update his picture in my office. All I
can do is to pause now and again and remind the world that he was here, and he
was loved. He’s still my son, and I’m
still his father. I remember.

I remember the first I saw him, rising in the
doctor’s hands over the partition in the ER, the nurses scurrying to take him
over to a table. I followed mutely, or
if I spoke I cannot remember the words because they had no meaning. I remember a great feeling of awe washing
over me as it registered that this had happened and the months of waiting for
it to happen and the months of knowing it would happen were overcome by the
staggering reality of it actually happening.
Somehow, it never seemed real until then, or rather I did not understand
what it meant until then. I never knew
what it would feel like to be a father until then. How could I have? It was one of the happiest moments of my life.

I remember giving him his first bath in the
hospital room a few hours later. The
nurse walked me through it and I was terrified I’d break him, drown him, or
some combination thereof. He was so
small, and the nurse made a comment about his hair, thick and lustrous
already. People always said something
about his hair.

I remember the first time I took him for a
walk, how paranoid I was about every little bump on the sidewalk, afraid I’d
wake him. James, of course, ultimately
proved almost completely oblivious to bumps once he’d fell asleep, and amused
by them when awake.

I remember an afternoon I took him to the
Dallas Arboretum, one of many trips, but the only one we took with just the two
of us. I tried, and failed, to pose him
for a number of photos, resulting in a hilarious reel of blinking, confused,
and smiling James photos that I still have.
In all of them, he seems to be wondering why I’ve been permitted to
attempt this. He’s absolutely
right. I remember giving up and
retreating to the biergarten, it must have been spring, and drinking a beer him
sitting in my lap, intently examining the passerby.

I remember his laugh (loud) , his smile (wide,
but low on teeth), and the way he lit up when someone new walked into the room
for him to play with. He had such a
wonderful spirit. He was so wonderfully
alive, wiggling, rolling and crawling army style (he never mastered the
coordination to include legs). Engaged
with everything.

I remember later too of course. The rapid escalation of illness from “unknown
stomach bug” to “atypical teratoid rhabdoid tumor” over the course of little
more than a month. I remember James
lying in his hospital bed and smiling despite the IVs, the shunt and after more
procedures in a shorter time span than most people ever endure. He never stopped laughing, and displayed more
grace than I can conceive of. He made us
very proud.

I remember my son every day. I will always be immensely proud to have been
one of his parents, and the last service I can offer him is to remember him. I will continue to do so. Five years later that’s what I want him to
know. We’re still here son. We miss you.
We remember.

Friday, July 17, 2015

Where is my baby? Not with his family. Not growing up,
vital and alert. Not here, not alive. The truth is I do not know. I
cannot. I hope. If you believe, as I do, that faith is distinct from
knowledge, that is the only real answer that I will ever have.

He
is not here, and the sheer wrongness of it has not lost the power to
smack me in the face, to take my breath away in a crowded room (last
week on the train, a family with children, one in a stroller- where is
my son? Where is my son? Not here.) without any warning four years on.
It happens less and I am glad for that. But it is not gone.

In
my dreams, it's often that way. A group of friends at the beach,
casually meandering through the day. I'm playing beach volleyball one
moment and the next I'm stricken with panic. James. How the hell did I
forget about James? Where did I leave him? When was the last time he was
changed? Oh my god I hope he's ok. It's very rare in my dreams that
he's actually gone, or that I am aware of that fact. Instead, it's as
though I've misplaced him. I'm sure both say more about my subconscious
than I'd like.

Often I want to write with news of triumph.
The conquest of grief and loss. But the only victor in this story is
James, who walked away from his cancer and pain the happiest, most
beautiful boy anyone could have hoped for. There is solace in that.
Indeed, solace abounds in many ways. Family. Friends. Years of recovery.
The dark days immediately after James' death, the oppressive grief that
sees intimidation in doorways, showers and a trip to the store has
largely receded. That is not to that say that the grief itself has
passed, because it has not. There is no triumph over grief.
Reconciliation, perhaps. You learn to live with it, to give it a wide
berth when necessary. To honor the dead in life.

I
take off every year for James' anniversary. Usually there's a trip. The
beach. A city with a zoo. Something I like to think we'd have done
together if he were here. But the day of must be in Dallas. I went to
visit James today like I do every year. I brought Eatzi's, a picnic
event. Avocados on the sandwich- he liked that because they were easy to
eat. And he could feed them to himself. I read to him a bit from a book
he wouldn't have liked but that I was reading anyway (something I also
did when he was alive, selfish father that I am).

These
days are sad but in an odd way I look forward to them. It is the one
day of the year that I have to spend with my son. I can let the grief
breath, allow my thoughts to ruminate and find some measure of peace.
For at least one day, I have not misplaced him and I know exactly where
he is. I can't speak to triumph over grief. No one triumphs over losing
their child. People survive, and they do it by letting themselves
grieve. Some days you have to let the loss win, and that's ok. You need
those days for all the others where the grief rides along with you, as
it will forever, but does not drown you.

I wanted a good mohawk James picture to put up with this but side mohawk James will do too.

Wednesday, October 29, 2014

Four years ago, the world welcomed James Camden Sikes. He won many hearts. He died too young, and he left a lifetime behind him, unfulfilled. Alive, James would now be four years old, a living breathing child rather than a projection in the minds of his family, a hazy best guess more closely resembling the "maybe" sketch on the backs of milk cartons than a child. That is a tragedy for which I continue to have no answers.

Over the years, I've made progress when it comes to projections. The milestones still come, that is unavoidable- pre-school, swim lessons, etc. Projection is a game which has no winners, and a type of speculation that really only ends in sadness. Similarly, the eternal infant paradigm is one I do not find comforting. The thought of James eternally 8 months old, his diapers forever in need of changing, stuck with two teeth poking out of his gums, is unfair to him. He surely deserves to grow up. He did deserve that. So I avoid projections and focus on memory.

Memories are painful only in context. Most of memories of James are happy ones. He was a fantastic baby, absurdly cute and very playful. He loved virtually everything, mostly slept well, and cried relatively little. James was the kind of baby who earned superlatives in the hospital. He laughed easily. These memories only become painful to recall in any sense if you contextualize them in death. That is unfair to them. On their own, they are outstanding. I try to remember that.

I do not pretend to understand the afterlife, but I have always thought at the very least one might entertain their own fantasy of what the highlights are. In my fantasy, James would welcome me as the man he would have been. My son. He would tell me everything about himself, that he was happy. He would fill in all the gaps on what we missed. I would tell him that he was loved, and that we were proud of him. He was a very brave boy. If you get to choose how eternity starts, that is the best I can hope for.

Today marked the end of a challenging month. October always is. July is better because his anniversary is closer to the middle of the month, and comes shortly after the 4th, a long weekend with plenty of opportunities not to think about loss. October offers no such respite, and the slow building festive cheer of the Fall provides an unfortunate contrast. Halloween, with all the beautiful children and their costumes, is unfortunately placed in this regard. In addition, I find birthdays difficult as they represent "what should have been" rather than "what was" and in children the former seems more important.

I visited James today in the afternoon. The weather is warmer than it should be, but absolutely perfect. We shared (quite unevenly) a cupcake I brought him. I've done that before, and I always try to pick a different favor. I don't know his favorite. I read, and wandered the grounds. All our old friends are still there. The woman buried closest to James nearly shares his birthday- October 30. Someone has been out earlier, and already brought her a Happy Birthday balloon. I brought one for James as well, as I do every year. The neighbor and her husband died a few months apart, a full life. The two "Happy Birthday" balloons dance in the light breeze beside one another, as though someone decided to decorate the tables at a surprise party. The headstones in the background are somewhat incongruous. The garden we buried James in is nearly full now, and the cemetery expanding. New roads lead deeper into the old pasture, towards the crest of the ridge the place sits on. I do not know why I spent so much time here immediately after he died, but it is a place of great comfort now. Back then, I needed somewhere safe and quiet to go with my grief, and I found it here. I survived. I worry about the tree by his grave- every year it seems scrawnier than the last. I sing him his song, and Happy Birthday.

The drive home takes longer than it should, I stayed too late and wandered into rush hour. I barely notice. Some days, like today, I feel like I am on autopilot, coasting on reflex from one destination to another. To string together enough thoughts to plan something more ambitious is simply not in me. I have come to accept that you cannot win everyday. Some you only draw, and that is a victory.

Wednesday, July 16, 2014

What do you write in year 3? What is there left to say? James died three
years ago today, surrounded by his family. He was, in my absolutely
biased opinion, likely the best baby in human history. At the very least
he had the best hair. He was very loved. His family misses him.
Everyday. The wound is not gaping, however. It has scabbed, scarred, and
come to resemble something that in triage might be relegated closer to
the back of the line than the front. The initial trauma has passed.
Coping strategies have evolved. The pain remains, but that is
unavoidable. In many ways, the pain breathes life into him now. It is a
reminder.

Not a day goes by that I don't think to myself "If James
were still alive, then" It's a horrible conditional phrase, one
reminiscent of high school algebra or very poor computer programming.
The examples are endless:

Some relate to my own decisions, a conditional phraseology that attempts to recreate a now extinguished paradigm:

"If
James were alive, then I would not have bought that car." I bought a
convertible. It was profoundly selfish. The car is completely useless. Then again I have no children, and therefore no need for
child friendly back seats. Even so, I bought a convertible with child
seat anchors. Just in case James happened to drop by.

Some relate to James himself, a profoundly unhelpful exercise with endless possibilities, all of them tragic:

"If
James were still alive, then he would be in pre-school." And talking. And
walking. And everything. His teeth would be coming in. He would have
been four this year. He would be smiling. Growing. Sometimes the details
are startling precise- shoe sizes, clothes size. Other times they are
more general, e.g., If James were alive, I would know the sound of his
voice. One cannot venture far down the rabbit hole. There are no happy endings.

Some days, the most mundane activities can bring it on:

"If
James were still alive, then I would need to buy (baby
food/diapers/etc.)" Some of these are completely immaterial now. With
any luck, James would be out of diapers and have graduated from gerbers.
Then again, I don't know what you buy for a our year old. That bothers
me more than anything.

But I think "If" almost everyday, one way or another. I rarely wonder
why anymore- that point is moot in my mind- but I absolutely wonder if.
In many ways, my entire life turns on the axis of James' sickness and
death. There is before, and there is after. I cannot explain my
existence in any other context. I would hardly know myself without it.

I talk to him sometimes. Mercifully never out loud. I
ask him rhetorical questions, "James, what do you think of that?" I
tell him about my day. "Hey James, I saw this awesome post about a hotel
that giraffes live in. You would love it." Sometimes I just tell him
that I love him, and that I miss him.

The evolution from crippling sadness and grief, the
kind that leaves you disappointed when you wake up in the morning not
because you want to die but because you simply have no interest in
continuing to be alive, to something more manageable comes in fits and
starts, and never along the path anyone promises you. I do not imagine
that anyone's path looks the same. I would hope not, because no one's
loss is the same.

I am not healed. I do not want to heal. I want to
remember my son fondly and constantly, with joy for the time we had
together. His entire family misses him and loves him. We think of him
constantly. He is our angel.

For those of you who have made donations to James'
fund, thank you. Last year we made a $15,000 contribution to ATRT
research being conducted by Dr. Charles Roberts at Dana Farber Cancer
Center in Boston. I had the chance to have lunch with Dr. Roberts when
he was in Dallas, and he is absolutely committed to his work. Though the prognosis for ATRT remains extremely poor, it is gratifying to know that so many brilliant people are working to create better outcomes. Visit Dr. Robert's lab's site
to learn more.

Monday, November 25, 2013

The above picture is of my brother and James. My father is holding him. The band-aid on James' hand is from one of his last IVs. James has his port in this photo and fortunately he required fewer IVs after the port surgery.

When I wrote that last sentence, I immediately began writing another. My mind spiraled from James' port to the chemo drugs he never needed that it was designed to deliver, to the TPN he did need his last few days alive. From there to me taking each custom made bag of TPN out of the outside refrigerator when he died and tossing each into the trash, unable to look at them lying on the bottom rack, promising a week's supply of food and life for Sikes/James Camden. To the trash can in his room where two years later I found the empty wrappers from the many drugs we did have to give him and my strange, complete unwillingness to throw them away.

The spiraling happens. An involuntary tic, it seizes you and for a moment can take you right back to chilled hospital rooms, saline and morphine. This is unavoidable. I used to think you could avoid it, but that is a fantasy, and not a helpful one. The best you can hope for is management. In the beginning a detour like that might cost you the day or the week. Over time you can hope to cut that to minutes or hours. The day can survive. You can survive.

In that picture my brother is engaged. Six months after James died, he was married. James was supposed to be his ring bearer. My cousin took his place. A year after he was married my brother and his wife announced they were expecting. Nine months later, my nephew was born. James' cousin is now two months old and mercifully looks nothing like James.

Life moves on. Its rhythm is singularly unmoved by your personal catastrophes. That is difficult to accept when your world implodes, but is absolutely true. There are babies littering my Facebook news feed who were nothing more than a hope or a dream to their parents when he died.

The holidays and the attendant motivation of these parents to monsterize, turkeyize, and santaize their babies in (admittedly sometimes adorable) costumes and outfits always strikes a chord. James had too few holidays. he barely caught Halloween and did not really understand all the fuss about Christmas and Thanksgiving. He spent July 4th in the hospital, though appropriately attired. The boy was always well dressed.

The first round of holidays was the worst. Unbearable almost. The next improved. The spiraling continues but can be contained. The benefit of life going on is that you can go on with it. I will never "get over" James' death, but I can have a life I am proud of with people that I love. I can enjoy them, and enjoy my memories of James. I can sing him Christmas carols at the cemetery because I believe he can hear me. I can hold my nephew in my arms and think not only of my son's death but his cousin's life. It doesn't have to be either/or.

I am thankful for all of that and for James. While I suspect I will always approach the holidays with trepidation, I am thankful that I can look forward to them now as well.

Tuesday, July 16, 2013

Two years. That's the number. Two trips around the sun. One and a quarter more than James ever made himself. People don't always know. "I didn't know you had kids" they'll say. I don't lead with it. "Hi, my name is Matthew, did you know about my dead son?" Conversation killer. But when they ask, I'll tell them. "Yes, I had a son. He passed away a few years ago." This answer is incomplete. Criminally so, but any explanation is.

I had a son. I had a son born with blonde highlights and dark brown hair. He came in a C-section, sunny side up. He never followed the plan well. There was so much hair the hospital nurses stopped to stare. He was very popular. I had a son I first bathed in a sink in a hospital, my hands trembling for fear he'd break. I had a son with eyes so blue you'd swear you were looking at the sky. I had a son who would not take a bottle, but who would sleep through the night. I had a son who was a horrible napper. I had a son who was always small, but who made up for it in volume. He didn't cry often, but he yelped as soon as he was able, and often. I think he would have been quite a talker. I think about that all the time.

I had a son who liked to feed himself, though he never mastered the art. I had a son who did not like to stay still; I had a wiggle worm. I had a son who could work his way across a room one inchworm crawl at a time. I had a son who did not like pacifiers unless they came on the heads of animals.

I had a son who got sick. Small things at first. Vomit. A passing stomach bug. A quick trip to the ER. A few hits of zofran to send us on our way. I had a son who got much sicker, encephalitis masking a tumor. A tumor presaging cancer. ATRT, atypical teratoid rhabdoid tumor. I spelled that wrong the first time I wrote here. I'd never heard of it. No one has. One tripped gene in one cell, one in a million. Like wet tissue paper growing faster and faster. Wet and soft means it grows fast, too quick to attain mass and density. Faster than the surgeons could work, and much faster than chemo. Too fast to even try the last.

I had a son who smiled through it all, who fought so hard it made my heart break. Who laughed after surgery and tried to play with his lines. He always smiled, and still rarely cried, though I cannot imagine the kind of pain he must have been in as the tumor grew and snaked down his spine. I had a son who made my heart break with pride. I could not have asked for a better one.

I had a son we buried in a poplar box, special order. Wearing a orange and blue striped polo. With his giraffes, like always.

I had a son I miss everyday. I have a son I will never forget, and who I will always love.